tamoxifen and joint pain

Going through breast cancer treatment Hormone therapy
21

An update, I stopped the APS tamoxifen 9 days ago and am now taking Wockhardt version, a few days later seemed to be a little better, now back to chronic pain again, struggling to get up and move so am phoning BCN tomorrow, I already have pain from an unrelated disorder and am finding this very difficult, please let me know how you all get on xx

22

i mentioned it to my breast care nurse last year she said quite a few of her ladies have this problem,she suggested insoles from chemist i tried them with not much joy,but they may work for other people katytc have you mentoined it to anybody and got any advice,i am going to try my gp on wednesday evening i have an appointment anyway,if i get good advice or answers as to why i will let you know missmessy

23

Hi there can anyone tell me how to stop night sweats. On tamoxifen now for 5 months an am like a zombie with gettin little sleep. Grateful for any ideas. Debs

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Hi Debs,
sorry to hear of your night sweats - they are so yuk aren’t they? I’m not sure you can stop them (unless you switch brand and are lucky enough to find that works for you) but some people find using a chillow helps (I certainly do)… if you type ‘chillow’ into the advanced search keyword thingy it will pull up some thread on this possibility. Other ideas people use are electric fans, water sprays, slepeing on towels (to absorb the water).

I have several night sweats a night but to be honest, after a while I kind of got used to them - wake up, turn over and drift off again. For me the chillow (I have two, one suplied by my BCN, one I bought) has been money well spent, but they aren’t cheap.

A few people take drug routes (low dose beta blockers or low dose anti-depressants) but that wasn’t a route I fancied.

Hope you get some relief soon

25

Thanks RevCat. Like u don’t fancy any more drugs but got to the stage where I need something . Never heard of chillows but goin to look it up now if I can!! Not to good on computers but wonderful what u learn sitting at home with time on ur hands. Thanks again.

26

Dear debs51

I don’t think the “advanced search” option will take you to the chillow, but I had a look through some old threads and found this one. Here’s the link:

share.breastcancercare.org.uk/forum/anyone-tried-a-ʹchillowʹ-t33770s100.html

I hope this is helpful for you.

Very best wishes

Janet
BCC Facilitator

27

Thanks Janet found it on google. Thanks

28

Spoke to BCN today and she says it is definitely not the tamoxifen, so will have to make appointment with doc, please let me know how you all get on xx

29

Hi Katy, sorry you are no further forward. See my lot next week - am planning to go armed with details of the research papers I’ve found (which are mostly about AIs but one says AI’s have higher indcidence than Tam…).

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Thanks RevCat, it’s soooooo painful, up half the night and difficult to get upright. What the heck???
Hope things are sorted for you too and you find the right source of your pain. Please keep us up to date xx

31

Hi ladies, due to see my lovely surgeon tomorrow, so doing some final bits of web research to support my assertion that Tam is causing my joint pain. I found this journal article from 2010 that suggests using the ‘posh’ form of Tamoxifen called Nolvadex rather than the APS/Wockhardt/Generics might alleivate these symptons… ncbi.nlm.nih.gov/pubmed/20347307

Suffice to say I am printing off the abstract to show to my team! You may also like to show it to yours…

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Thank you so much RevCat, am off to docs in a couple of hours so have copied this and am taking it with me.
The pain is very bad and I really don’t want to take painkillers if changing to Nolvadex is all that’s needed. xx

33

I have been reading this thread with interest as i am suffering aches and pains and am due for my yearly check up with Onc tomorrow. Unfortunatly Nolvadex is no longer available as i believe the patent ran out and now the cheaper brands are able to make it,i was on Nolvadex originally and can vouch it was brilliant.
Wishing you all the very best in the search for your answers and the information so far

34

Thanks anxious - obviously I should have dug a little deeper… seems a bit daft that the research roughly coincides with the end of Nolvadex being available in the UK. A bit more googling and I found an old thread on here about it share.breastcancercare.org.uk/forum/nolvadex-d-how-could-we-get-it-back–t25288s24.html Rats! Thought I might have found a soliution.

Anyone had the liquid form? The old thread suggests less SEs maybe?

Katy, so sorry for raising hopes falsely. What a twit I am.

35

Just back from docs and he said he had no problem prescribing Nolvadex, so popped it in computer and zilch, so said he would contact pharmecologist and get back to me.
That will be right then that it is not available, thought my problems maybe over!! (sad face)
Go back on Thurs for blood tests and have been given stronger painkillers, please let me know what happens tomorrow RevCat, and thank you for all your searching xx
PS anxious can you let us know too.

36

Thanks Katy, and sorry about the bum steer… will report back tomorrow.

37

Well probably nothing you don’t already know, but the doctor I saw today - a woman of middle years and formerly working in rheumatology - told me to take max dose fish oils (any sort) and max dose vitamin D, which research evidently shows is beneficial in peri-menopausal joint pain which is similar to Tam pain. At least she didn’t shake her head and dismiss it, indeed she had that ‘yup, everyone tells me this’ kind of look on her face. Nolvadex is no more :frowning: Didn’t ask about the liquid stuff (forgot) but now have to raid the herbalist nextdoor to church for gallons of codliver oil etc…! She also said you can get slow release forms of anti-inflammatories to take at night as the pain tends to be worse in the morning (or it is for me)… don’t know if any one has truied that route?

Sorry I can’t be more use.

let’s keep each other informed of any useful insights though.

38

I had my yearly appointment with the Onc and mentioned my aches and pains. The aching being more troublesome than the pain,especially my arm on the side of my surgery. She said no alarm bells were ringing and the symptoms i was describing resembled rheumatic.Said my bone scan last year was all clear although as we all know a year is a long time and things can change. However that was a very stressful time for me so i’m happy to go along with her confidence. She said to try cod liver oil or that other one that begins with a G,she said Tamoxifen can cause the body to suffer symptoms that are usually suffered in older people,ie i’m 49 and somertimes feel 89.I will keep an eye on this thred as it’s nice to have conversations with like minded people who are able to understand.x

39

Ah, anxious, it’s clearly being 49 that’s the problem…! How silly of us not to know that.

Was it glucosamine your onc mentioned?

I have just bought seven seas extra high strength cod liver oil liquid (ugh, shudder) which has 100% RDA for vitamin D too. She said I needed 100% RDA vit D as well as fish oil. Also starflower oil which she recommended for hot flushes… she confirmed it has no phytoestrogens and if nothing else is good for hair and nails!!!

40

Hi,

I am having my blood tests on Thurs, it’s to measure for imflammation, if it does show any I will be sent to a rheumatologist. Earlier in this thread beverleys had the same diagnosis, is it a co incidence?
I just don’t know, please keep posting, will let you know how I get on xx